Archive for the ‘special needs parenting’ Category

About a month ago, I went to see Cubby’s teacher for his report. Now, Cubby is 4 and only in preschool, and I’m not really sure we should be doing reports, but this is the way of the school, so we do. Actually, it is a good time to catch up with the teacher and address any concerns. Cubby gets speech and OT during school hours, and the therapists send me weekly reports, and on the whole he is doing well.

On the whole he is doing well at school too. He has a couple of areas of brilliance, and a couple of areas of all-too-familiar struggles. For the most part, there was nothing new. This teacher likes Cubby and handles his eccentricities and active imagination very well. Only one thing she said actually surprised me: he wasn’t participating in music class.

Cubby loves music. He is musical. Even in his sleep he makes harmonic noises. He loves to sing, and he can identify all the popular songs that come on the radio. When I told him my friend had written the music for one of the songs we heard on the radio, he became convinced that all music was made by our family and friends. He doesn’t always let me sing, but he certainly enjoys to do so himself. My dad plays guitar in a band, and Cubby tells me he will be a rock star too. He struts and dances like a Jagger-Mercury hybrid, so it wouldn’t surprise me.

But telling me he won’t participate in music class? That surprises me. Cubby being quiet? Surprises me even more.

I wondered if he just didn’t like the choice of rhymes. If the teacher played Maroon 5, Fun or (eek) Bon Jovi, she’d surely see another side to him.

Or would she?

Cubby was singing at the dinner table some South African song I wasn’t familiar with, and I guessed he’d heard it at school. I asked him why he didn’t sing in music class, and his response shouldn’t have come as a surprise to a seasoned spectrummy mummy. He loves hearing himself sing, but the other kids sing “different.” I guess some of his classmates-like me- sing different notes (okay, off-key), and he just can’t stand it. He told me he really didn’t like music class, and didn’t want to go any more.

We had a little chat about how problems have solutions, and if something is hard for him, he can always tell us so we can look for ways to make it better.

I suggested he wear his blue head ‘cones’ to protect his ears, and he was so enthused with this idea that he was wearing them the next morning before even setting off for school. I emailed the OT for her suggestions (that would be another round of Therapeutic Listening) and pulled them from his head to tuck in his backpack.

And then came the next problem: without the protection he could hear ghosts, vampires and zombies. But problems have solutions, I just need to shift the battle from sensory to supernatural.

You’ll have to forgive my mood in this post. I have a particularly nasty chest infection. It hurts when I move, laugh, talk, or- you know- breathe. Pudding is also home ill with tonsillitis. She complained about her head hurting at the weekend, and took an extraordinary (for her) five hour nap on Sunday, but since we visited the doctors and got her medicine, she seems back to herself.

With one exception.

Because she had a fever, we didn’t give her her usual medication for ADHD. Sometimes Pudding is doing so well, I forget what a vital component medication has been for her. Then we take a break, and I remember.

I remember Pudding before she was five, with a body and brain that seemed to be in overdrive. And now, even though she is ill, it is just the same. Her body can’t get the rest she needs to recover. Her brain is seeking stimulation that she just can’t handle at the moment. She needs to rest, and that is the one thing she can’t do.

I never wanted to put Pudding on medication. I looked in vain for another way. We tried a few ADHD treatments where we felt the side effects were worse than the results, and then made a last-ditch attempt before giving up. Her particular chemistry found the right match, and the hyperactivity reduced considerably. It isn’t perfect, she still struggles greatly with attention, but her engine isn’t in overdrive any more, and slowing down just a little has helped her in every possible way.

Honestly, I don’t know if the child who couldn’t sit for even 20 seconds would have been welcomed into a mainstream class. I’m not sure if the child who skipped through books so quickly that every single one we owned was torn from its bindings would have ever slowed down enough to learn to read, or write. I know that she finds it easier to get through her various therapies now. I know that she is able to learn now. And play. And swim. And do all the other things that kids can do.

She may have made this progress anyway, but seeing her these last couple of days makes me think it would have been slower, and harder. The faster her wheels spin, the deeper she sinks into a rut.

I’m not saying that medication is for every child- far from it. Stimulants were terrible for Pudding, and a spectrum child seems far more likely to have atypical side effects. I still want to be the idealist mother who could find another way. But I know we made the right choice for our kid. I know that she is happier, feels better, when she can calm herself.

So what really ticks me off, is when I read yet another unscientific article about how ADHD (and sometimes ASD) is a construct of our times. Sometimes people actually send me these articles, wanting to help, I suppose, but doing quite the opposite. I can think of a dozen other ways to help other than telling me I’m doing it wrong. Sometimes I read, sometimes I just delete. They always read the same. Parents and doctors don’t let kids be kids, and if we just let our children play outside, or kept them off candy/ computers/ TV, or gave them the right diet/ vitamin/ parental attention they would be fine. Let kids be kids, and don’t turn them into zombies!

When the truth is- I just want to let my kid to be a kid, that is all I’ve ever wanted. This is one of many ways I help her to do just that. I wouldn’t even care about how exhausting her condition is for me, if it wasn’t even worse for her. There is no magic pill, but if there is something that helps her, perhaps even reduces the risk of harm coming to her, I’m going to keep on doing it.

And if there is anyone who thinks Pudding’s ADHD or her autism aren’t for real….well, they’re more than welcome to come here and get a dose of reality. Because much as it hurts at the moment to chase around a child who can’t keep herself out of harm, it hurts a whole lot more to be judged for doing it as well as I can.

Yes, I’m contrary like that. Anyway, I’m not really talking politics, but talking about how we talk about politics, or don’t.

You see, Spectrummy Daddy and I can’t talk about politics at work. Under the Hatch Act, we are expressly prohibited from sharing our political preferences. This makes a lot of sense. More than most people, the government decides our work and where we live, so we might feel strongly about one form of government or another. But we go to work no matter who the President is, and support United States Government interests no matter who is running the show.

Embassies and Consulates around the world celebrate democracy by holding Election Night parties, or due to the time difference in our case, an Election Breakfast. There was truly a buzz of excitement from our South African guests at our event. In this country, where there has been 46 political killings in the last two years, it is even more important to reflect the stability of a peaceful democracy.

I was musing this over yesterday evening, and I thought about how we hadn’t really talked to our children about politics. Obviously, they’re both very young, but they are ambassadors too, and one day they’ll also be voting citizens of the world. They will have to learn the meaning behind the rhetoric. They’ll have to learn to speak up for themselves, and for those who don’t have a voice.

They are also little sponges, and I was interested to see how much they’d absorbed of our world these last few days.

So I asked Cubby who he would vote for President: Romney or Obama?

Steve. (I assume he means Steve Rogers aka Captain America– the only person he thinks should be running the country. After all, who would uphold American ideals better than his idol?

I asked Pudding the same question, and if you can’t guess her response, you’ve obviously never been here before.

Hello Kitty.

In fairness, it wasn’t as absurd a response as you might expect. Hello Kitty was indeed running an election campaign for the Friendship Party.

Maybe they are learning something after all. They don’t sacrifice their ideals for the sake of the popular vote.

I have to hand it to both kids- they at least vote in their own interests.

A recent post I wrote got a lot of attention. I’d dashed it out quickly, before starting work, as part of another blogger’s link-up. It was a sensitive subject: calling out Ann Coulter’s use of the R-word, and no sooner had I published it than I was bracing myself for the backlash.

I should have taken longer than a couple of minutes to write that one. I should have made it even more clear that I don’t have a political agenda, but a personal one to do my best to ensure this is as accepting a world as I can make it for my children.

And I know how ridiculous that sounds, and that I will never be enough change how people think and speak and treat each other, but I also know that I have to try. I know that I’m not on my own. And I know that I’d do anything to prevent my children being called that term.

The number of views on that post kept creeping up, until it far exceeded anything else I wrote. While I was pleased that so many people were interested in learning about why the R-word is offensive to the special needs community, I thought how strange it is that the most read post about my children is about something that shouldn’t apply to them at all.

I got comments that day, but they were all of a consensus with me. I couldn’t help but wonder about the ways my piece had been shared, and what other people were thinking and saying about it, but nothing negative came my way.

Another autism site occasionally takes my posts and publishes them for a wider audience. A few days after publishing my post, they shared it too. Here, the comments became offensive: I was a “cry baby”, I should “grow up”, “it is just a word”. There were supportive comments too, but what really stuck in my head was the person who insisted that I was “using a blog dedicated to handicapped children to score points against a Conservative woman (I) don’t like.”

I made a conscious decision not to respond to any of the comments there, and asked the site to no longer use my posts. I understand that some welcome debate, and encourage opposing views with the aim of persuading them to their own way of thinking. In this case, no heed was being paid to what I’d written. Assumptions were made about me, and what I had to gain from writing, that had nothing to do with the actual words I’d written. There would be no changing minds here.

But that didn’t mean that I forgot about the accusations made against me. I was angry and hurt. I’m offended by a person using the R-word be they a friend or celebrity, politically left or right. Am I using my children? I’ve always written this blog with the intention of sharing it with them.

This is our journey. We laugh, we love, we grow, we make mistakes, we reflect, and we learn. If what I write helps other people on their journey, I’m happy for that- but there is no ulterior motive here. This is simply the way we encounter the world, and how the world encounters us.

And yet those words stayed with me. They held me hostage. They made me question what I’d done, and if I should any longer write publicly. It would be so easy to stop, I have so little time anyway.

Even when I forced myself to write, just so that I wasn’t allowing someone else to make that decision for me, it didn’t stop the little voice in my head from repeating those things over and over. Then I got a comment from a new reader:

I’ve begun following your blog and I find it so moving, amusing, and delightful that I decided you needed to know! It seemed fitting to share it under one of my favorite posts. This makes me think of “The Moose” by Elizabeth Bishop, and the play on perspective made my eyes tear up a bit! Though I have no children of my own, your blog makes me feel like I can handle whatever comes my way with grace, compassion, and humor. Thanks

That comment made me question if I’d handled this situation in a way that was true of what she’d said. Not really. I’d allowed myself to feel all the weight of negativity without sensing any of the light. Ignoring all the support and community to focus on a person’s opinion that is far removed from us. Who not only doesn’t understand, but won’t try to.

And if I stopped writing for any reason other than it was the right time for me and my family, I wouldn’t be living life on my terms. I thought about what I would want my children to do if they were attacked in a similar way, and found my own example severely lacking.

When I think about how I want them to handle whatever comes their way, I want it to be with grace, compassion, and humour. Do I want this reader to be right about me, or a harsh critic?

And what if, what if one day somebody were to call Pudding the R-word? Would I want her to feel held up by the way we see her, or weighed down by one offensive word?

Thank you to the lady who wrote that comment just when I needed it. Thank you to each and every one of you who take the time to read, and particularly those who comment. I don’t always have time to respond to them these days, but I am going to make sure that I pay attention to what you say. That I really feel your words, and give those the weight that they deserve.

Maybe then I’ll handle things that come my way with the grace, compassion, and humour that we’re all capable of.

I woke up to the news today that Ann Coulter had used the R-word in an insult to The President following last night’s debate. I went to bed last night with a migraine, but today I’ve woken up feeling worse. I’m tired of hate speech. I’m tired of waking up to a world with that word in it. There is no place for it- not in politics, and not in our personal lives.

A fellow autism parent blogger has started up a link for a post denouncing Ann Coulter’s slur, and some parents have posted photos to show exactly who is being insulted by the R-word. Both of my children have developmental delays; and both are beautiful, smart, funny, complex and worthy human beings. I liberally use photos of them in my blog, but I never will in association with something as derogatory as the R-word. That word doesn’t apply to them; it doesn’t apply to any of us.

I’m dismayed by a pundit using that word, but I’m just as angry about the number of people retweeting her comment, or defending such an offensive slur. If you use that word, if you defend the use of that word; you are hurting me and my family. And if you are going to start doing that, believe me, I have a number of choice words for you…and not one of them nearly as hateful as this one.

I decided to take the kids out for an early dinner. Today is one of those perfect Jozi spring days. The Jacarandas are blossoming, but they’re not quite at their vibrant peak yet. On a Friday afternoon sitting outdoors at a cafe in Sandton, you could be in Europe, only with better weather. This is an unexpected treat for us all. I was supposed to be having dental treatment, but the water was out- sometimes water and power outages are the only sign that this is still a developing country. Developing being the right word, for all its economic slump, there is a lot of construction going on here, and sometimes the wrong pipe gets hit.

I sipped at my capuccino with cream, and enjoyed the moment of perfection, knowing it couldn’t last for long.

Pudding was content. She’d had the Halloween Parade at school, which she’d loved. She ordered herself a bacon and avocado sandwich and apple juice by herself. Yes, it is the same thing she always ordered, but I’m pretty sure it is exactly what she feels like eating. She isn’t just doing okay, she is doing really, really well lately. She seems more comfortable in her own skin than I’ve ever seen. The wind picked up and she turned her face to it, enjoying the caress to her skin.

Cubby was out of sorts. I knew he hadn’t napped, and was too hungry and too tired to know what was wrong. Normally very expressive, he was down to grunts and shouts. He couldn’t decide what to eat, even if he wanted to eat. A siren in the distance hurt his ears. He was in and out of his chair. Putting his hands in his drink and smearing it over the table. Then he began playing with his spit when the drink was confiscated. Finally he turned to tormenting his sister for entertainment. The wind picked up, and he shrieked in pain as it whipped at his skin.

Watching the two of them was a study in contrasts. Pudding, at peace; Cubby intent on disturbing it. This was her two or three years ago. This disorder and chaos. Feeling something was wrong, and not knowing how to put it right. How far she has come.

Then I let my mind wander further back. I remember holding infant Pudding. Apart from when she was nursing, (which I naturally did a LOT) she was screaming. Arching her back, red-faced, furious at me for not fixing what was wrong. And I’d go through everything I thought I knew about babies, wondering what I must have missed to make her thrash around like this. She pulled at my hair in her rage. The screaming made my head throb, and I wanted to run away from this tiny creature who put all her trust in me. And though I wanted to shout and scream, I pulled her in closer, and kissed her downy head, and held her until we breathed together, just rocking and kissing, until the screaming was done.

I picked up Cubby and cradled him. He resisted at first- pushed away, then caved in. His floppy body curled into mine and I kissed his face. “I’m a baby.” He said, like he does so often. I didn’t correct him this time. I kissed his fingers and his arms. He twirled his hands through my hair, just like his sister always had. I kiss the soft nape, and when I close my eyes, I forget where I am, or when I am. It doesn’t matter- I am mothering instinctively.

Three year-olds can only be held for so long, so I release him, and he dances for a while- trying to catch the eye of the waiting staff. I turn back to Pudding, with her wry, contented smile. I see what’s catching her eye: some paper teapots attached to the ceiling are fluttering in the breeze. “Dancing teapots”, I say out loud. “Dancing teapots”, she echoes. We watch them together, and her hand creeps up into my hair, but in comfort, not in rage.

In that moment of calm, I feel all the many joys she has brought me. All the dancing tea cups that I would otherwise have missed. I know, if I have to, I can do it all over again. Even if I still feel more rookie than veteran. We’ll grow, and develop, and get there together.

Cubby got sick yesterday. He started with diarrhea, went to lost appetite, and finished up at fever. We had a stay-at-home day making the most of our new GIANT beanbag (only it isn’t beans and the kids adore the sensory experience) thing. So there was too much TV and movies, with a little bit of drawing and writing practice, but mostly a comfortable day at home.

Then comes nightfall, and the illness kicked up a notch, as they are wont to do. He was sick all over our bed, and the diarrhea became worse. The fever got higher today. It would abate when we gave him medicine, but then pick up again as it wore off. The highest it got was 102.7. In the week, we’d have been straight to the clinic, but at the weekend it gets trickier. He didn’t appear dehydrated, but the diarrhea was more frequent, and he was definitely more miserable.

In the late afternoon, I changed his diaper and found blood and mucous. Oops, should have done a warning earlier in this post, shouldn’t I? I really hope you’re not reading this over breakfast. Sorry. Anyway, with that, the four of us were winging it to the ER/Casualty whatever you want to call it. Last time I went there was with Pudding, and it had been a pretty bad experience. Spectrummy Daddy pointed out the peanuts(!) scattered on the floor, and I wasn’t hoping for much better on this occasion.

But this time it was better. They did chide me for only having a GP and not a pediatrician. But I just took it, without pointing out that our GP knows more about allergies and anaphylaxis than anyone in that nut-infested clinic, and that we did have a pediatrician based in this very hospital, but he died and you didn’t tell us and when we called for an appointment the replacement had too many patients so we had to go elsewhere. To the GP.

I also didn’t, having learned my lesson the last time, try to tell them about Cubby’s sensory issues, or his hyperactivity, how he could have ADHD, or he might have a dash of Asperger’s. I kept mum, if you will. This was much better. He was just a three year-old having a very bad weekend, and we were just his average family looking for some help. They found us a room quickly, and the doctor came not much longer after that.

The doctor examined Cubby, who only resisted slightly (progress!). He decided Cubby was not dehydrated, and the bloody stools were a result of too much diarrhea, probably caused by an infection. He wrote a prescription, and we were free to go.

Not much of a story, eh? Well, for me the big story here is what I’m not mentioning. Have you noticed I haven’t spoken of Pudding? Pudding, who can’t stand to be cooped up in the house for two days, coped. And Pudding, who hates the hospital, came along without a peep. And Pudding, who used to crawl all over the floor and put everything she found in her mouth, sat in her chair and didn’t even notice the peanuts on the floor. Pudding, who finds waiting rooms too much, waited. Pudding, who finds the examination room a sensory nightmare, sat in her chair and drew Hello Kitty.

So, while it wasn’t the best weekend, it shows the leaps and bounds our girl has been making lately. Not just in things she can can now do, but also in the things she no longer does. Today could have been a hundred times worse. Today I saw how things are getting better. Now we only need to hope the same for poor Cubby.